#hchlitss transcript
Healthcare Social Media Transcript
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From:
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Thu Apr 12 17:00:00
PDT 2012
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To:
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Thu Apr 12 18:15:00
PDT 2012
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kdhoffman2 Welcome back to #hchlitss with
our guest @KatrinaMoody #hchlitss
KatrinaMoody @kdhoffman2 LOL
- fun party! #hchlitss
KatrinaMoody @kdhoffman2 Happy
to be here! Hey everyone! #hchlitss
kdhoffman2 Welcome all to our #hchlitss lurkers,
participants, friends! #hchlitss
KatrinaMoody RT @kdhoffman2:
Welcome all to our #hchlitss lurkers,
participants, friends! #hchlitss
rv_rikard @KatrinaMoody <--
Thank you for being our guest tonight! #hchlitss
nursefriendly Andrew
Lopez, RN from New Jersey :) #nurseup RT @rv_rikard:
Welcome to all..please take a moment to introduce yourself! :) #hchlitss
yayayarndiva RT @kdhoffman2: @KatrinaMoody did
a terrific post on her website http://t.co/DGiGZead to get us set 4 #hchlitss tweetchat
in 10 mins.8pm ...
rv_rikard RT @kdhoffman2: Welcome all to our #hchlitss lurkers,
participants, friends! <-- wall flowers, trouble makers, partners in
crime.. #hchlitss
yayayarndiva RT @rv_rikard: We r
BACK in 15 mins #hchlitss in
30 minutes with guest @KatrinaMoody on parenting, special needs, advocacy &
lots more.. ...
KatrinaMoody @rv_rikard Happy
to be here! Who all's joining us? #hchlitss
schwartzbrown Hi,
Mindy here, social worker from NJ. Lost my brackets with UNC. #hchlitss
yayayarndiva RT @rv_rikard: @kdhoffman2 --
evening Kathleen :) #hchlitss
kdhoffman2 I am Kathleen Hoffman, health communication and literacy is
my area of expertise & I host with fellow troublemaker @RV_Rikard #hchlitss
nursefriendly :)
Need to try this via Google Hangouts one day :) RT @KatrinaMoody: @nursefriendly If
only we could share through the screen! #hchlitss
yayayarndiva @rv_rikard @kdhoffman2 Waving
hello from.the left coast #hchlitss
KatrinaMoody @rv_rikard Oh,
& I'm Kat to my friends, wife, mom to 3 amazing guys with special needs,
writer, advocate & blogger at @Kats_Cafe #hchlitss
KatrinaMoody @nursefriendly I
LOVE Google+ Hangouts! They're a blast! #hchlitss
rv_rikard R.V. Rikard #Sociology Doctoral
Candidate @ #NCState - my research focus is #healthlit and #health #disparities (#sdoh) #hchlitss
kdhoffman2 Welcome @yayayarndiva @schwartzbrown @nursefriendly Waving
backatcha #hchlitss
rv_rikard @yayayarndiva <--
WOOT! Waving back from the east coast! #hchlitss
KatrinaMoody RT @kdhoffman2:
Welcome @yayayarndiva @schwartzbrown @nursefriendly Waving
backatcha #hchlitss
rv_rikard RT @KatrinaMoody: @nursefriendly I
LOVE Google+ Hangouts! Theyre a blast! <-- AGREE!!! #hchlitss
mamasonbedrest Good evening everyone!! #hchlitss
rv_rikard @schwartzbrown @nursefriendly -
Welcome!! #hchlitss
kdhoffman2 Welcome @mamasonbedrest #hchlitss
rv_rikard @mamasonbedrest <-- Welcome to the chat! Great to see
you! #hchlitss
KatrinaMoody @mamasonbedrest Hey
there! #hchlitss
nursefriendly I'm
seeing some familiar faces :) #nurseup #s4pm #hcsm RT @KatrinaMoody: @nursefriendly I
LOVE Google+ Hangouts! They're a blast! #hchlitss
rv_rikard RT @KatrinaMoody: Oh, & Im Kat to my friends, wife, mom to 3
amazing guys with special needs, writer, adv & blogger at @Kats_Cafe #hchlitss
yayayarndiva I
am Mimi Poinsett mama pediatrician, Amazon Advocate #KnitAHoodie maker
for #TrayvonMartin #hchlitss http://t.co/JuJ2tZFG
kdhoffman2 I want our guest 2 have as much time as possible so I'm
going 2 get us started fairly soon.all lurkers & troublemakers intro
self #hchlitss
nursefriendly RT @yayayarndiva:
I am Mimi Poinsett mama pediatrician, Amazon Advocate #KnitAHoodie maker
for #TrayvonMartin #hchlitss http://t.co/JuJ2tZFG
yayayarndiva RT @kdhoffman2:
We're about to start #hchlitss tweetchat
after a few weeks hiatus <==did I spell that right? #hchlitss
yayayarndiva RT @rv_rikard: Now
that March Madness is over...the #hchlitss is
back and ready to ROCK! #hchlitss
kdhoffman2 Let's get this chat going: Q1: @KatrinaMoody To
you what is autism awareness? #hchlitss
kaycey55 RT @yayayarndiva: I am Mimi Poinsett mama pediatrician, Amazon
Advocate #KnitAHoodie maker for #TrayvonMartin #hchlitss http://t.co/JuJ2tZFG
rv_rikard RT @kdhoffman2 Im going 2 get us started soon.all lurkers
& troublemakers intro self <-- WOOT! #hchlitss
rv_rikard RT @kdhoffman2: Lets get this chat going: Q1: @KatrinaMoody To
you what is autism awareness? #hchlitss
KatrinaMoody @kdhoffman2 Autism
Awareness is about promoting understanding and respect for those w autism and
families living w/ the dx #hchlitss
nursefriendly #autism #autistic #specialneeds RT @kdhoffman2:
Let's get this chat going: Q1: @KatrinaMoody To
you what is autism awareness? #hchlitss
kdhoffman2 Welcome @kaycey55 to #hchlitss #hchlitss
KatrinaMoody @kdhoffman2 And
the hard answer ... autism awareness is also about understanding how to
advocate for ourselves and our families #hchlitss
lewismal Saw this happening. Declaring myself a lurker thrying to see
what going here. Looks interesting. #hchlitss
KatrinaMoody RT @kdhoffman2:
Welcome @kaycey55 to #hchlitss #hchlitss
kdhoffman2 RT @KatrinaMoody: @kdhoffman2 Autism Awareness is promoting understanding
& respect 4 those w autism &families living w/ the dx #hchlitss
KatrinaMoody @lewismal Welcome! #hchlitss
kdhoffman2 Welcome @lewismal...hoping you do find it interesting #hchlitss
rv_rikard RT @KatrinaMoody: And the hard answer -autism awareness is also
about understanding how to advocate for ourselves and our families #hchlitss
lewismal Hi I'm Malcolm a health promotion officer from Australia,
working on healthy child development. Father of a 4yr old with ASD #hchlitss
KatrinaMoody How
do others see autism awareness? How do they define it for themselves and/or
someone they love? #hchlitss
KatrinaMoody RT @rv_rikard: @lewismal <-- All
lurkers are welcome :) #hchlitss
kdhoffman2 RT @KatrinaMoody: @kdhoffman2 & the hard answer .autism awareness is
also abt understanding how 2 advocate 4 ourselves & families #hchlitss
kdhoffman2 RT @lewismal: Hi Im Malcolm hlth promotion officer from
Australia, working on healthy child development. Father of a 4yr old w
ASD #hchlitss
TheHelpGroup RT @KatrinaMoody:
How do others see autism awareness? How do they define it for themselves and/or
someone they love? #hchlitss
nursefriendly #health #autism RT @KatrinaMoody How
do others see autism awareness?How do they define it for themselves and/or
someone they love? #hchlitss
lewismal Autism awareness = a type of mental health literacy
see http://t.co/YFMnFzl5 Cool
definition #hchlitss
rv_rikard @KatrinaMoody:
How do others c autism awrnss? How do they def 4 themslvs and/or smene they
love? <- Are these ques hard to answer? #hchlitss
kdhoffman2 @KatrinaMoody I
liked the way you described autism in your family...please share #hchlitss
KatrinaMoody Love!
RT @lewismal:
Autism awareness = a type of mental health literacy see http://t.co/pebbijHk Cool
definition #hchlitss
lewismal =knowledge and beliefs about mental disorders which aid
their recognition, management or prevention. #hchlitss
rv_rikard @TheHelpGroup <--
Greetings! Welcome to the chat! #hchlitss
kdhoffman2 Welcome @TheHelpGroup #hchlitss
yayayarndiva #KnitAHoodie in
honor of #TrayvonMartin #duduza sized #PeaceBeActive #hchlitss http://t.co/IyVFQIM9
KatrinaMoody Though
I would also term it as a type of neurological and developmental
awareness #hchlitss
newmoon63 RT @yayayarndiva: #KnitAHoodie in
honor of #TrayvonMartin #duduza sized #PeaceBeActive #hchlitss http://t.co/IyVFQIM9
kdhoffman2 @KatrinaMoody please
share your definition of autism awareness as you described it in your
family #hchlitss
TheHelpGroup @lewismal That is an
excellent definition #hchlitss
KatrinaMoody @kdhoffman2 Autism
is part of the whole - every person is a piece of the puzzle that makes up our
family, autism & all #hchlitss
NeonKnight44 RT @KatrinaMoody:
Love! RT @lewismal:
Autism awareness = a type of mental health literacy see http://t.co/pebbijHk Cool
definition #hchlitss
lewismal ability to recognize Autism; knowing how to seek good
information; good help, how A develops overtime, value of Early
Intervention #hchlitss
yayayarndiva RT @kdhoffman2:
Let's get this chat going: Q1: @KatrinaMoody To
you what is autism awareness? #hchlitss
katherinekleon Hi,
Katherine Leon, in lurking mode tonight but grateful to learn more re: autism
awareness #hchlitss
rv_rikard @NeonKnight44 <--
Welcome to the chat! #hchlitss
KathyKastner +1
RT @katherinekleon:
Hi, Katherine Leon, in lurking mode tonight but grateful to learn more re:
autism awareness #hchlitss
KatrinaMoody @kdhoffman2 In
our family Autism really is just a piece of the puzzle, and making those pieces
fit is true advocacy/understanding #hchlitss
KatrinaMoody @katherinekleon Hi
there! #hchlitss
lewismal Knowing how to put a person with ASD at ease so you can
enjoy the interaction to mutual benefit. #hchlitss
rv_rikard @katherinekleon <-- Good evening Katherine! :) #hchlitss
TheHelpGroup @kdhoffman2 @rv_rikard I
am probably just listening because I might get pulled away, but glad to find
you! Great topic #hchlitss
rv_rikard @KathyKastner <--
Good evening Kathy - good to see you! #hchlitss
rv_rikard Q2: @KatrinaMoody What tools to you know for parents in
advocating for their autistic child's health? #hchlitss
KatrinaMoody We
have three boys on the spectrum and hubby is an Aspie, so the varying facets of
Autism are an important part of understanding #hchlitss
KathyKastner @rv_rikard And
you too,. Glad you''re back on air #hchlitss
rv_rikard @TheHelpGroup <--
just in case you are pulled away -- thank you for being with us! #hchlitss
lewismal Autism awareness could include knowing that extended
breastfeeding might be protective, produce life better outcomes for ASD
kids #hchlitss
yayayarndiva @KatrinaMoody @kdhoffman2 Autism
Awareness also Autistics Self Advocacy #hchlitss
kdhoffman2 RT @KatrinaMoody: Have three boys on the spectrum &hubby is
an Aspie,varying facets of Autism R an important part of understanding #hchlitss
katherinekleon RT @KatrinaMoody @kdhoffman2 Autism
Awareness is about promoting understanding & respect for those w/autism
& families living w/dx #hchlitss
rv_rikard RT @KathyKastner: And you too,. Glad youre back on air
<-- @kdhoffman2 and
I are *very* happy to be back!!! :D #hchlitss
KatrinaMoody @rv_rikard Tools
for advocacy, for your own child w/autism, include a generalized understanding
of the disorder and role in ... #hchlitss
rv_rikard @KatrinaMoody --
what is Aspie? #hchlitss
lewismal Autism Awarenss: Knowing how to navigate the system. How to
advocate, how to present your concerns observations. #hchlitss
nursefriendly RT @lewismal: Knowing how to
put a person with ASD at ease so you can enjoy the interaction to mutual
benefit. #hchlitss
nursefriendly RT @rv_rikard:
Q2: @KatrinaMoody What
tools to you know for parents in advocating for their autistic child's
health? #hchlitss
kaycey55 RT @yayayarndiva: #KnitAHoodie in
honor of #TrayvonMartin #duduza sized #PeaceBeActive #hchlitss http://t.co/IyVFQIM9
KatrinaMoody Understanding
autism from a parent's POV is different than understanding it from an Aspie
(someone w/Aspergers) POV #hchlitss
KatrinaMoody @lewismal Very good
way to put this ... it's also having the cahunas to stand up for what you
believe is right for your child #hchlitss
lewismal How to get services & professional to work together to
produce better outcomes for kids with Autism #hchlitss
nursefriendly RT @yayayarndiva: @KatrinaMoody @kdhoffman2 Autism
Awareness also Autistics Self Advocacy #hchlitss
kdhoffman2 RT @KatrinaMoody: Understanding autism frm a parents POV is
different than understanding it frm an Aspie (someone w/Aspergers) POV #hchlitss
nursefriendly RT @lewismal: Autism
Awarenss: Knowing how to navigate the system. How to advocate, how to present
your concerns observations. #hchlitss
KatrinaMoody More
tools for advocating 4 your child w/autism - Understanding the IEP and
educational , the medical and specialists, work 2gther #hchlitss
katherinekleon RT @lewismal: Autism
Awarenss: Knowing how to navigate the system. How to advocate, how to present
your concerns observations. #hchlitss
KatrinaMoody @lewismal This is a
hard one, but communication is key, as is making sure that YOU are the first
expert when it comes to them all #hchlitss
KatrinaMoody Biggest
tool for advocacy - knowing when to get help! Sometimes you need some1 who
understands things better, it's okay to ask! #hchlitss
yayayarndiva Autism
Awareness comes in many colors @bluehijabday @thereal_msbrooks @lynnesoraya do
it daily on twitter #hchlitss
kdhoffman2 RT @KatrinaMoody: More tools 4advocating 4 your child w/autism -
Understnding IEP &educational, medical &specialists, work 2gther #hchlitss
lewismal T2 A good family income or public $$ or practical supports
allow family to use what supports might be there . #hchlitss
KatrinaMoody @yayayarndiva absolutely
- practicing autism awareness beats talking about it any day! #hchlitss
rv_rikard MT @KatrinaMoody: Biggst tool 4 advocacy - knwing whn 2 get help!
Smtims u need sme1 who undrstnds thngs better, its okay to ask! #hchlitss
rv_rikard RT @yayayarndiva: Autism Awareness comes in many colors @bluehijabday @thereal_msbrooks @lynnesoraya do
it daily on twitter #hchlitss
KatrinaMoody @lewismal I think
part of that is understanding the supports in place U can tap into, like
community resources, early intervention #hchlitss
yayayarndiva Autism
Awareness comes evidenced based @thinkingautism @shannonrosa @lizditz @stevesilberman @ejwillingham #hchlitss
lewismal @katrinamoody Yes
need to stand up. Advocate effectively Assertive but without getting aggressive
or narky. #hchlitss
rv_rikard RT @yayayarndiva: Autism Awareness comes evidenced based @thinkingautism @shannonrosa @lizditz @stevesilberman @ejwillingham #hchlitss
yayayarndiva Autism
Awareness comes understanding #sdoh #healthdisparities #hchlitss
kdhoffman2 Q3: Can you describe the reality of advocating for kids with
special needs when talking with specialists and doctors? #hchlitss
KatrinaMoody @yayayarndiva Hopefully
everyone has folks they look up to in continuing instruction on Autism #hchlitss
rv_rikard RT @yayayarndiva: Autism Awareness comes understanding #sdoh #healthdisparities <-- ABSOLUTELY! #hchlitss
nursefriendly RT @yayayarndiva:
Autism Awareness comes in many colors @bluehijabday @thereal_msbrooks @lynnesoraya do
it daily on twitter #hchlitss
nursefriendly RT @yayayarndiva:
Autism Awareness comes evidenced based @thinkingautism @shannonrosa @lizditz @stevesilberman @ejwillingham #hchlitss
lewismal @thehelpgroup Mental
Health Literacy definition has driven a lot of Austrian policy & program
development #hchlitss
KatrinaMoody @kdhoffman2 The
reality...The rest of the world goes on, while U R caregiver, therapist, nurse,
teacher, & parent #hchlitss
KatrinaMoody @kdhoffman2 I
work from home after years of trying and failing to hold down a full-time job,
even a part-time job. I'm mom first. #hchlitss
yayayarndiva At
times assertiveness is misconstrued for snarkiness, aggressiveness #hchlitss
AlisynGayle RT @rv_rikard:
RT @kdhoffman2:
Welcome all to our #hchlitss lurkers,
participants, friends! <-- wall flowers, trouble makers, partner ...
KatrinaMoody @kdhoffman2 You
have to see yourself as your child's best and brightest expert, always #hchlitss
lewismal Q3 Both myself & wife have much experience so we
navigate the system with relative ease. #hchlitss
yayayarndiva Autism
Awareness comes w awareness that children with special needs might or might not
have autism- many conditions #hchlitss
KathyKastner @KatrinaMoody Might
I ask: where do you get your support.. andfrom what sources your
knowledge #hchlitss
lewismal Q3 Many other including health professionals are frustrated
for years tryoing to get #hchlitss
rv_rikard @AlisynGayle <--
Welcome! :) #hchlitss
rv_rikard RT @KathyKastner: @KatrinaMoody Might
I ask: where do you get your support.. andfrom what sources your
knowledge #hchlitss
schwartzbrown In
US, if autism were seen as purely a mental health diagnosis, kids would be in
big trouble in terms of services #hchlitss
kdhoffman2 @lexismal @KatrinaMoody I
believe it is incredibly hard to not be "aggressive" Assertiveness is
definitely mistaken 4 aggression #hchlitss
KatrinaMoody @KathyKastner 3
on the spectrum, plus my hubby, & I'm a local advocate & parent mentor,
plus publish on my site as well #hchlitss
lewismal Q3 Many others including health professionals are frustrated
trying to get a diagnosis & early intervention services. Takes years. #hchlitss
KatrinaMoody YES!
RT @schwartzbrown:
If autism were seen as purely a mental health diagnosis, kids wld be in big
trouble in terms of services #hchlitss
KatrinaMoody @kdhoffman2 You
sometimes try so hard not to be seen as aggressive that you forget TO be
assertive, though #hchlitss
KatrinaMoody @lewismal Absolutely
- the standards have been updated, but not the resources for diagnosis #hchlitss
katherinekleon our
elementary inclusive. Kids accept, no questions. Brave parents assert to
educate teachers/parents in areas school system fails #hchlitss
yayayarndiva Autism
Awareness means we share the tent with others with special needs,abilities,
identification, are not entangled by language #hchlitss
lewismal Q3 The system is Broken. We expect struggling families often
with low resources to navigate a system even profs can't navigate. #hchlitss
KatrinaMoody @katherinekleon this
is great - a collaborative effort works well for parents and kids! #hchlitss
KatrinaMoody True!
RT @lewismal:
The system is Broken. We expect struggling families often w low resources 2
navigate a system even profs cant #hchlitss
kdhoffman2 MT @yayayarndiva: Autism Awareness & sharing tent<=@KatrinaMoody's
children have rare disease as well...caused blindness #hchlitss
lizditz #hchlitss See @shannonrosa on
awareness vs advocacy, understanding & support http://t.co/pLDoWoIT (re #autism but
app. to other cond.)
yayayarndiva Autism
Awareness means some lives all across the spectrum, some defy diagnosis others
don't get services unless squeaky wheel #hchlitss
KathyKastner @KatrinaMoody And
with all that to take care of, you have time for a hugely informative rtweetcha
:) #hchlitss
KatrinaMoody .@yayayarndiva By
language do you mean label? Or stereotype?? #hchlitss
KatrinaMoody @KathyKastner I
try. Kids are in bed and it's quiet, that's when mommy plays! #hchlitss
KymGrosso RT @lizditz: #hchlitss See @shannonrosa on
awareness vs advocacy, understanding & support http://t.co/pLDoWoIT (re #autism but
app. to ...
KatrinaMoody Good
point: RT @yayayarndiva:
Some lives across the spectrum, some defy diagnosis others dont get services
unless squeaky wheel #hchlitss
yayayarndiva I
have a 15 son w bipolar disorder/auditory processing disorder- on spectrum
depending upon which specialist, school is talking:) #hchlitss
KatrinaMoody Good
share! RT @lizditz: #hchlitss See @shannonrosa on
awareness vs advocacy, understanding & support http://t.co/TEMTvaB1 #hchlitss
KathyKastner Is
there any education for parents avail or are parents educating their
'team' #hchlitss
KatrinaMoody @yayayarndiva Ah,
yes - we've been there, I see that! #hchlitss
rv_rikard @KymGrosso <--
Welcome!! #hchlitss
yayayarndiva @KatrinaMoody Language-
label, stereotype, self identification, group identification- very
heterogenous, often in contrast #hchlitss
lewismal I think it would be helpful how teach families how to
navigate they system and how to get it help u solve problems that matter. #hchlitss
KatrinaMoody @KathyKastner Good
question ... there are many resources for parent learning, some Fed and some
State #hchlitss
kdhoffman2 @KatrinaMoody it
is incredibly hard to live with the way you are treated when your child is
"different" #hchlitss
yayayarndiva My
son has been teetering off and on the spectrum- dueling diagnosticians, dueling
school, mental health, social service programs #hchlitss
katherinekleon MT @yayayarndiva:
Autism Aware means some lives all across spectrum, some defy diagnosis, others,
no services unless squeaky wheel #hchlitss
KatrinaMoody @yayayarndiva very
true ... at the end of the day, it is the one dx'd who matters, none of the
labels, language used, etc. #hchlitss
yayayarndiva I
am a Pediatrician, Patient Navigator and family kwon do Amazon Advocate #hchlitss
lewismal This website is one of the Aust Govs major awareness/family
education investments Autism/ASD http://t.co/MZW32zbE Good resources #hchlitss
KatrinaMoody .@kdhoffman2 It
is isolating, at least for many parents, esp. w/3 kids w/ special needs - not
easy to find others who understand #hchlitss
yayayarndiva navigation=
between mental health, school districts, medical health, social programs and
more -Been There Done That and more #hchlitss
rv_rikard RT @lewismal: This website is 1 of the Aust Govs major
awareness/family educ investments Autism/ASD http://t.co/I1YZgG2I Good res #hchlitss
KathyKastner @KatrinaMoody Glad
2 hear abt resources. And what abt any online support? forums, FB #hchlitss
KatrinaMoody @yayayarndiva We
dealt with that earlier on with all of our boys, still a bit with our youngest
now. It's frustrating #hchlitss
katherinekleon @KatrinaMoody -
at all grade levels, push to have kid-led meetings to address ideas and
questions. They always know best! #hchlitss
yayayarndiva Autism
Awareness is community engagement- interface with first responders, juvenile
justice, faith communities #PeaceBeActive #hchlitss
rv_rikard RT @KathyKastner: @KatrinaMoody Glad
2 hear abt resources. And what abt any online support? forums, FB <-- GOOD
QUESTION! #hchlitss
lewismal Parent denial of problems is a key issue. Years can be lost
by "He will grow out of it" attitude #hchlitss
kdhoffman2 RT @yayayarndiva: navigation= 'tween mental health, school
districts, med hlth, soc. programs & more -Been There Done That &
more #hchlitss
KatrinaMoody @KathyKastner I
created my site as a safe spot for parents to be 'real' about living w a
special needs family ... but other resrcs #hchlitss
yayayarndiva @KathyKastner of
course @thinkingautism @thecoffeeklatch Thinking
Person's Guide to Autism #hchlitss
KatrinaMoody @KathyKastner I
connect with lots of others on Twitter, Facebook, and Google+, always open to
new connections #hchlitss
KatrinaMoody @yayayarndiva Great
resource there! #hchlitss
kdhoffman2 @KatrinaMoody Q4:
What do special needs parents need most? #hchlitss
lewismal Better education of child health nurse, playgroup leaders,
Early education staff could help with early recognition & helpseeking #hchlitss
KatrinaMoody @lewismal the denial
stage is a hard one to experience, deal with, and move past, and some parents
live 4 yrs at that stage #hchlitss
yayayarndiva Autism
Awareness means walking w my 15 yo son through juvenile justice system,
residential schools, AWOL, sheriffs, police #hchlitss
KatrinaMoody @kdhoffman2 Special
Needs Parents need empathy, understanding, and sometimes a good kick in the
pants *grin* - we just need others #hchlitss
rv_rikard @kdhoffman2 <--
Whoops, sorry I did not shoot off Q4 -- I'm really learning a great deal
tonight!! WOW!!! #hchlitss
KatrinaMoody Special
needs parents need others to BE THERE through the ups and the downs. #hchlitss
KatrinaMoody RT @yayayarndiva:
Autism Awareness mns walking w my 15 yo son thrgh juvenile justice system,
residential schools, AWOL, sheriffs.. #hchlitss
yayayarndiva Parents
also need support during transition ages- teen years through adulthood-
disjointed system of care for young adults #hchlitss
rv_rikard RT @KatrinaMoody Special Needs Parents need empathy,
understanding, and sometimes a good kick in the pants *grin* - we need
others #hchlitss
kdhoffman2 MT @yayayarndiva: Autism Awareness means walking w my 15 yo son
thru juvenile justice system, residential schools,sheriffs, police #hchlitss
NAMIMass @KathyKastner There
are many advocacy orgs that educate parents, NAMI, Nat'l Federation for
Families of Children's MH, etc #hchlitss
kdhoffman2 RT @KatrinaMoody: Special needs parents need others to BE THERE
through the ups and the downs. #hchlitss
yayayarndiva I
often need a nap, hot chocolate, knitting and time to do more than be an
advocate #hchlitss
KatrinaMoody @yayayarndiva Great
point, transition times are so difficult, with so many voices vying to be
heard #hchlitss
lewismal Q4 Parents need responsive services most. Resources to pay
for EI also very helpful. A bit if help with housework & respite #hchlitss
KatrinaMoody @NAMIMass Excellent!
I was going to put a list together to post ... NAMI is awesome - trained
locally w/them! #hchlitss
KatrinaMoody @yayayarndiva AMEN!
Time to be ME - something often overlooked for special needs parents! #hchlitss
NAMIMass @rv_rikard Hi
sorry I'm late, got involved with something, lost track of time #hchlitss
yayayarndiva For
me co parenting with son's dad who has another autistic child and a gifted
child- distance and cross cultural #hchlitss
KatrinaMoody @yayayarndiva PS
- I like naps! They are awesome too, LOL #hchlitss
KathyKastner @NAMIMass Thank you
and lovely to 'meet' you here. Org is so amazing #hchlitss
lewismal Our network of good friends/family very important. Many
accept our sons odds behaviors. Sometime they delight. #hchlitss
yayayarndiva Me
in Sonoma County, da boi in Stockton, da dad/sibs in San Jose...tricounty
living for us all:) #hchlitss
KatrinaMoody @lewismal Great
points, there are some resources out there, but sometimes they aren't
well-known, & sometimes not enough! #hchlitss
rv_rikard RT @NAMIMass: Hi sorry Im late, got involved with something, lost
track of time <-- not a problem at all!! It is awesome 2 c u :D #hchlitss
KatrinaMoody @lewismal We have a
few staunch friends and family as well! #hchlitss
kdhoffman2 @yayayarndiva There
is so little available after child is out of school..res. into residential sits
4 severely affected.. #hchlitss
yayayarndiva Me
an African American born in US, my son's dad from Ethiopia- add cultural
differences, perspectives on child rearing vary:) #hchlitss
KatrinaMoody @yayayarndiva :-)
Balancing it all must be challenging sometimes! #hchlitss
lizditz For children: Wrightslaw for special education law is one of
the most important resources #hchlitss
yayayarndiva @kdhoffman2 trust
me I am a looking and da boi due to come home with me in 5-9 months #hchlitss
NAMIMass @KatrinaMoody This
is always a problem of making resources known and what options are
available. #hchlitss
rv_rikard RT @lizditz: For children: Wrightslaw for special education law
is one of the most important resources #hchlitss
yayayarndiva @KatrinaMoody Balance
no: riding the wave and detaching from chaos yes:) #hchlitss
lewismal Autism: how being poor is bad for kids with autism and
society big time http://t.co/S49Oc8rT Gr8
new research. #hchlitss
KatrinaMoody @kdhoffman2 absolutely
-- there are waiting lists over 20 yrs long for waiver services here in Indiana
... LOVE Wrightslaw! #hchlitss
yayayarndiva RT @lizditz: For children:
Wrightslaw for special education law is one of the most important
resources #hchlitss
NAMIMass @lizditz Oh
yes, Wrightslaw is a excellent source for special ed law and other
resources #hchlitss
lizditz Agree that post-school resources for special needs not
enough, many programs not a good fit need more development #hchlitss
yayayarndiva RT @NAMIMass: @KatrinaMoody This
is always a problem of making resources known and what options are
available. #hchlitss
kdhoffman2 Most of healthcare for people with disabilities is funded by
medicaid which is poorly funded in many states #hchlitss
KatrinaMoody @yayayarndiva LOL
- I like that analogy - riding the way! #hchlitss
KatrinaMoody RT @lewismal: Autism: how
being poor is bad for kids with autism and society big time http://t.co/rymrcxx7 Gr8
new research. #hchlitss
KatrinaMoody THis!
RT @kdhoffman2:
Most of healthcare for people with disabilities is funded by medicaid which is
poorly funded in many states #hchlitss
NAMIMass In the U.S. Most school districts also have SPEDPACS which
can also put people in touch resources #hchlitss
rv_rikard RT @kdhoffman2 Most of healthcare for people with
disabilities is funded by medicaid which is poorly funded n many states <-
AMEN! #hchlitss
yayayarndiva Add
my partner, el jibaro from Puerto Rico to the mix- my "nuclear
family" cuts across 6 languages and two continents #hchlitss
rv_rikard RT @NAMIMass: In the U.S. Most school districts also have
SPEDPACS which can also put people in touch resources #hchlitss
lizditz I live in a school district predominantly low income, the
community schools movement is helping http://t.co/B26vTOoo #hchlitss
KatrinaMoody @NAMIMass Yes, also,
district liasons usually have access to higher needs services for families of
kids in trouble #hchlitss
KatrinaMoody @yayayarndiva Never
complaining about the language barrier here again *grin* #hchlitss
mindthecompany RT @kdhoffman2: RT @KatrinaMoody:
Special needs parents need others to BE THERE through the ups and the
downs. #hchlitss
yayayarndiva Medi-Cal
and SSI for da boi...my underemployment, wiping out of all my savings,
retirement and loss of a house... #hchlitss
KatrinaMoody RT @lizditz: I live in a
school district predominantly low income, the community schools movement is
helping http://t.co/NK1FBvbb #hchlitss
lewismal Autism awareness = realizing that more tax payer funded
Early Intervention services will save $$ long term. Also morally right. #hchlitss
KatrinaMoody @lizditz also,
pulling in community resources can help a lot! #hchlitss
kdhoffman2 Another fact is that the funds from Medicaid & the
special waivers DO NOT cover the cost of care... #hchlitss
rv_rikard @mindthecompany - Welcome!! #hchlitss
KatrinaMoody @yayayarndiva I
hear that, no savings here, live on disability, SSI & my income from
working online! #hchlitss
lizditz oh oopsie @NAMIMass: our district is the only one that has Special Ed
PTA ( SPEDPACS ) #hchlitss
KatrinaMoody Exactly!
RT @kdhoffman2:
Another fact is that the funds from Medicaid & the special waivers DO NOT
cover the cost of care... #hchlitss
NAMIMass I suggest to parents to be the squeaky wheel and don't be
afraid to speak up/speak out for their child, contact their legislators #hchlitss
yayayarndiva In
CA- repeal of AB3632 and county realignment with da boi not quite eligible for
Regional Center Services= Bermuda Triangle #hchlitss
KatrinaMoody @lizditz I don't
think we have it here, I"ll need to look up more info ... any links? #hchlitss
NAMIMass Legislators control Medicaid purse strings so if they don't
know the extent of what is needed on a regular basis, i.e., tell them! #hchlitss
KatrinaMoody @NAMIMass We've gone
to legislators before, also to State Depart. of Ed ... the squeaky wheel works
sometimes! #hchlitss
kdhoffman2 MT @KatrinaMoody: @yayayarndiva no
savings, live on disability, SSI & my income from working
online<==caring is full time job #hchlitss
lizditz #hchlitss it
has been hard to grow our Special Education PTA many parents don't want to be
publicly identified as having a special needs kid
KatrinaMoody @yayayarndiva Brings
up another point - understanding local legislation that affects you and how to
be proactive there #hchlitss
lewismal Twitter & other social media can be a key support for
families caring for people with autism link any condition. #hchlitss
NAMIMass Here is the Mass. Assocn. of Sped Pacs http://t.co/jDyQqiPp #hchlitss
KatrinaMoody @kdhoffman2 Absolutely,
I have 3 boys with mult. dxs, Autism, Epilepsy, Cerebral Palsy, Low Vision ...
Caring 4 them IS full-time #hchlitss
yayayarndiva My
personal income barely hit $10K last year, underemployed crone pediatrician
with too many degrees, too many mtgs for da boi:) #hchlitss
kdhoffman2 There is a desperate need 4 legislators to understand that
parents w/kids w/special needs are not John Tavolta w/loads of cash #hchlitss
KatrinaMoody @NAMIMass Thanks!
Will follow the link and see if there is something similar for Indiana! #hchlitss
AndrewGoodmanF RT @lizditz "I live
in a school district predominantly low income, the community schools movement
is helping" http://t.co/3jZkTP0F #hchlitss
yayayarndiva @KatrinaMoody Proactive
with legislation= hahahahha! Surely you jest:) #hchlitss
lizditz #hchlitss SPEDPAC
= Special Education Parents Advisory Committee I know Mass does, I think some
other East Coast states do too
KatrinaMoody @yayayarndiva I
so totally hear that! My degree went out the window, can't afford it
anyway #hchlitss
KatrinaMoody @lizditz Definitely
following up on that for around here! #SPEDPAC #hchlitss
lizditz #hchlitss Special
Education PTAs are supported by National PTA org; can help...and not quite be a
good fit.
lizditz #hchlitss Special
Education PTAs are supported by National PTA org; can help...and not quite be a
good fit.
yayayarndiva @lizditz we have a
limping barely effective advisory committee in Sonoma County with SCOE #hchlitss
kdhoffman2 MT @lizditz: it'sbeen hard 2 grow our Special Ed, PTA many
parents dont want 2 b publicly identified as having a spl. needs kid #hchlitss
KatrinaMoody @yayayarndiva *Laughs*
I've sent letters to legislators and been available for committe discussions on
Restraint & Seclusion #hchlitss
yayayarndiva With
Special Education PTAs sometimes dueling diagnoses #hchlitss
KatrinaMoody RT @kdhoffman2:
MT @lizditz:
Is this common? I've noticed some parents don't like having their kids id'd as
having special needs #hchlitss
lewismal If parents got 15 mins a day support from social media and
did 30 mins a week online advocacy it could help. Finding time hard #hchlitss
kdhoffman2 @KatrinaMoody I'm
glad you mentioned Restraint & Seclusion...you blogged on your
experiences... #hchlitss
yayayarndiva @KatrinaMoody As
my son broke my nose at age 10- I have an interesting perspective on restraint
and seclusion:) #hchlitss
yayayarndiva @lewismal are you a
parent who works this social media schedule or suggesting this model to us
parents:) #hchlitss
kdhoffman2 @KatrinaMoody w/Restraint
& Seclusion, most res.programs don't have training on dealing w/those
w/autism...very frightening #hchlitss
yayayarndiva Restraint,
incarceration - when my da boi at 12 assaulted me, mental health worker
insisted I call the police... #hchlitss
KatrinaMoody Yes,
Restraint & Seclusion is a loaded issue, needs versus overused and
dangerous RT @kdhoffman2: @KatrinaMoody Im
glad you #hchlitss
KatrinaMoody @kdhoffman2 A
lot of instructors aren't trained, or the aides arent - very scary when it
comes to our kids, since many can't tell #hchlitss
yayayarndiva 10
weeks in juvenile hall for da boi at 11- scramble for services via Judge and Me
cause everybody else moving at a snails pace... #hchlitss
lewismal @yayayarndiva I'm
lucky. I can find that time most days but it is hard. Fall asleep often
ASAP. #hchlitss
yayayarndiva @KatrinaMoody for
me my son going to juvenile hall= saved my life, turned his life around w 2 yrs
residential school.... #hchlitss
KatrinaMoody @yayayarndiva At
4 my son could break a door off the hinges ... he just recently broke daddy's
foot ... he's now 7 #hchlitss
yayayarndiva crisis
brought me, da dad, da sibs, el jibaro and da boi together- w blended extending
family of choice for all #hchlitss
KatrinaMoody @yayayarndiva that
flows into another problem, the juevinile justice system #hchlitss
yayayarndiva @KatrinaMoody In
CA- most are well trained, but circumstances can be dangerous for all
concerned... #hchlitss
KatrinaMoody @yayayarndiva sometimes
the most difficult things are the ones most needed #hchlitss
KatrinaMoody @NAMIMass They also
tried to bring it up locally, been shot down at Fed level once, and back again
... it's a loaded issue #hchlitss
kdhoffman2 We could have another discussion about the number of
children w/sight issues, dyslexia, etc. in juvenile justice sys. #hchlitss
KatrinaMoody @NAMIMass Also there
is restraint and seclusion in emergency situations, and then in "to make
it easier" situations #hchlitss
yayayarndiva Orange
County teen is missing after release from jail - Los Angeles Times http://t.co/0ETdxTH0 transition
age story #hchlitss
KatrinaMoody @yayayarndiva Read
that earlier ... sad :( #hchlitss
yayayarndiva RT @nwi Autistic teen
dies after being shot by Cal City police http://t.co/vzyo4rDE #hchlitss
KatrinaMoody @kdhoffman2 Couldn't
we though - researched it for a while and some of the facts were
staggering! #hchlitss
KatrinaMoody @yayayarndiva very
sad :( #hchlitss
NAMIMass @KatrinaMoody Yes
but deescalation techniques exist to address most situations but people either
don't know them or don't use them #hchlitss
esfaceblack RT @yayayarndiva:
RT @nwi Autistic
teen dies after being shot by Cal City police http://t.co/vzyo4rDE #hchlitss
yayayarndiva Charlie
Manley | Autistic, Down’s Syndrome Teen Found Dead in Gold Coast High-Rise
Trash Chute: http://t.co/E3bKor67 #hchlitss
yayayarndiva Family
and police clash after officers fatally shoot an autistic teen in his
home http://t.co/0FW5RgIX via @HuffingtonPost #hchlitss
janetbwd RT @yayayarndiva: RT @nwi Autistic teen dies after being shot by Cal City
police http://t.co/vzyo4rDE #hchlitss
KatrinaMoody @NAMIMass this was
what we made our district reconsider ... they weren't utlizing de-escalation
techniques, just restraining #hchlitss
lewismal Children w issues in juvenile justice sys. New research
review on Language issues & juvenile justice http://t.co/FrqS81dO #hchlitss
yayayarndiva Autistic
Teen Dies After Jumping from Moving Ambulance http://t.co/ykyD9H1q #hchlitss
rv_rikard 1st - many many thanks to @KatrinaMoody for
being our guest!!! We appreciate you sharing your experience with us!! #hchlitss
KatrinaMoody RT @lewismal: Children w
issues in juvenile justice sys. New res. review on Lang. issues & juvenile
justice http://t.co/bgaEDTuZ #hchlitss
KatrinaMoody @rv_rikard What
a GREAT chat! #hchlitss
NAMIMass Glad I remembered to join the discussion, even if late.
Thank you @KatrinaMoody #hchlitss
kdhoffman2 Could we have some final thoughts? #hchlitss
KatrinaMoody @rv_rikard I
was honored to be a part of the discussion! #hchlitss
rv_rikard 2nd - a transcript of the tweet chat will be made avail
at http://t.co/bRBTkp5X #hchlitss
KatrinaMoody RT @rv_rikard: 2nd -
a transcript of the tweet chat will be made avail at http://t.co/SBx4R9o7 #hchlitss
yayayarndiva Thanks @katrinamoody don't
forget the mama pediatrician of da boi who loves skittles and wears a
hoodie #hchlitss
kdhoffman2 Thank you for being our guest @KatrinaMoody and
for sharing some of your experiences w/advocacy w/us! #hchlitss
yayayarndiva More
abt me The Snapdiva Returns http://t.co/Vdc0ftAc, new
post coming today #hchlitss
KathyKastner Learned
tons. thanks.RT @KatrinaMoody: @rv_rikard What a GREAT chat! #hchlitss
yayayarndiva RT @kdhoffman2:
Thank you for being our guest @KatrinaMoody and for sharing some of your experiences
w/advocacy w/us! #hchlitss
KatrinaMoody @kdhoffman2 Honored
to be here! #hchlitss
KatrinaMoody @yayayarndiva marked
it to read later! #hchlitss
kdhoffman2 I'd like to thank all our participants for their involvement
and passion on this subject. #hchlitss
rv_rikard 2nd if u r on #Google+
pls circle Health Communication and Health Advocacy https://t.co/lxHto3pK #hchlitss
yayayarndiva Love
it too!RT @KathyKastner:
Learned tons. thanks.RT @KatrinaMoody: @rv_rikard What a GREAT chat! #hchlitss
KatrinaMoody At
the end of the day, advocacy means looking out for your kids and yourself, know
that it's okay to be overwhelmed, ask for help! #hchlitss
rv_rikard AND Health Literacy on #Google+ https://t.co/nANoTOYY #hchlitss
kdhoffman2 Please be sure to check out http://t.co/DGiGZead for
more information on advocacy! #hchlitss
KatrinaMoody I
think I followed you all - I enjoyed chatting with you all! {group hugs} (Yes,
I'm silly that way) :D #hchlitss
KatrinaMoody RT @rv_rikard: AND
Health Literacy on #Google+ https://t.co/as5O0fYw #hchlitss
KatrinaMoody RT @kdhoffman2:
Please be sure to check out http://t.co/RPOytilc for
more information on advocacy! #hchlitss
rv_rikard 3rd - many many thanks to my partner in crime -> @kdhoffman2! #hchlitss
kdhoffman2 MT @KatrinaMoody:At end of day, advocacy means looking out 4 your
kids & yourself, know that its ok 2 b overwhelmed, ask for help! #hchlitss
KatrinaMoody Don't
forget you can continue the discussion here: http://t.co/6mMVKLBE #hchlitss
KatrinaMoody RT @rv_rikard: 3rd -
many many thanks to my partner in crime -> @kdhoffman2! #hchlitss
kdhoffman2 And many thanks backatcha @rv_rikard! #hchlitss
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